It feels like...

Lots of people ask me how does it feel.  How does it feel physically?  How does it feel to wait for a liver?  How does it feel to know your only going to get sicker?  Lots of hows! 

Physically it hurts.  Having Budd-Chiari Syndrome means I have clots blocking the returning blood flow from my liver to my heart, blood has back up in my liver.  And once that was full, it started filling up my spleen. It feels congested.  Its kinda like being pregnant and feeling like your about to pop.  Or for those moms that carried babies high up, where you were sure your ribs were going to crack open because there was just no more room in there.  Yeah kinda like that.  My abdomen is sensitive.  Some days more than others.  Sitting is uncomfortable and Laying down can be even worse.  When I If I cheat on my diet, my good friend Ascties knocks on my door,  Or stomach I should say.  Fluid builds up in my stomach and makes me look 7 months pregnant.  I really need to stop that.  And sometimes my body aches from fatigue.  You know how you feel after the flu?  That, Ive been hit by a truck feeling. That's how I feel most days.  I also take a medication for my H.E that makes me go to the bathroom pretty much all day and its like having a stomach bug every day all day.  Draining, no pun intended!

Waiting for a new liver is frustrating.  You want to get sicker to be able to get your transplant but at the same time you want to stay healthy so that you don't get sick.  I will only be able to have a cadaver liver, so that puts the added pressure of knowing someone will die so that I can live.  Then there is the rules.  Call if your fever is over a hundred or you get sick.  Don't go our of town or anywhere unless you can make it back here in 2 hours. I count the days, week and months as they pass.  I constantly check the OPTN data reports to see how many people are waiting with me.  I try to pass my time by spreading info and organ donor awareness.  It makes me angry that there aren't more donors.  It makes me sad that people die waiting.  It breaks my heart. 

I'm not sure if the wait for a new liver is worse than waiting to get sick.  They kind of go hand in hand.  Any hope of a liver transplant rests on how sick I get.  How I feel now is nothing compared to how I will feel when the time does come.  I don't wan to get sicker, but I know eventually I will.  One day I will wake up and notice my eyes have turned yellow and jaundice has set in.  Or maybe the bloody vomiting from ruptured varices will be first?  If I were to miss a dose of my blood thinners I could throw another clot, this time maybe in my brain or lungs.  Or maybe my ammonia levels will spike and and I will slip into a coma.  So how does it feel to know that these are all possibilities?  Its scary!  It keeps me up at night and it makes me cry.  But its the life that was laid out for me.  Its what I have to go though to get to where I want to be.  Alive